First online cancer survivorship tool

OncoLife, the first online cancer survivorship care plan tool developed by physicians and nurses from Penn’s Abramson Cancer Center has resulted in high user satisfaction rates according to research which was presented at the American Association for Cancer Research (AACR) 100th Annual Meeting 2009 in Denver.

“This tool empowers patients to open important dialogue with their healthcare providers to better understand the effects of their cancer treatment,” says James Metz, MD, an associate professor of Radiation Oncology who serves as editor-in-chief of OncoLink and the department’s Chief of Clinical Operations. “Because this tool is Internet based, cancer survivors and healthcare providers now have an easy and reliable way to obtain information regarding survivorship care issues instantaneously.”

The researchers say the high number of users who said they planned to share their care plans with their health care providers is encouraging. Since many patients rely on their primary care physicians to deliver this multidisciplinary “survivorship care” after they’re released from treatment with oncologists, communication is essential to helping patients get the care they need. Previous Penn research has shown that breast cancer survivors – the nation’s largest group of cancer survivors – give low marks to their primary care doctors’ knowledge of late effects of cancer therapies and ways to manage symptoms related to their disease or its treatment. In the new Penn study of OncoLife users, just 13 percent said they had received survivorship information in the past.

By inputting information about the type of chemotherapy agents patients received, location of radiation therapies and/or types of surgical procedures they had, patients, family members and their doctors or nurses can create an easy-to-understand, personalised survivorship plan. Among topics addressed in the plans are potential late effects of treatments, ways to reduce risk of and monitor for these effects, and recommendations for future cancer screening. The plans also offer guidance on issues like sexuality, fertility, and genetic risk.

“Putting survivorship care plans in the hands of patients allows them to become educated about their risk, have well-informed discussions with their healthcare teams and be advocates for their own care,” says OncoLink nurse educator Carolyn Vachani, RN, MSN, AOCN, a member of the research team.

". . .and the world cannot be discovered by a journey of miles, no matter how long, but only by a spiritual journey, a journey of one inch, very arduous and humbling and JOYFUL, by which we arrive at the ground at our own feet, and learn to be at home."
Wendell Berry